AMCHP Issue Brief, February 2012

Children and youth with autism spectrum disorder and other developmental disabilities (ASD/DD) require a comprehensive array of medical, behavioral and developmental health services that are often inadequately covered under the current system of health coverage. This leaves children at risk for missed or delayed care and their families with significant financial burdens. The Patient Protection and Affordable Care Act (ACA) is designed to increase health coverage, improve benefits, and provide important new insurance protections for all Americans. Many of the law’s provisions will impact children, including those with ASD/DD, and will be implemented over time. This report, developed by The Catalyst Center at the Boston University School of Public Health, offers a brief description of selected provisions in the ACA that have implications for children with ASD/DD. It also describes how state Title V maternal and child health (MCH) programs can maximize opportunities under the ACA to develop and strengthen systems of care for children and youth with ASD/DD.

Iowa Autism Council By-Laws and Operating Procedures, Revised 2012

These By-laws and Operating Procedures are designed to guide the membership and work of the Iowa Autism Council. The Iowa Autism Council is a collaborative resource that envisions its role as an advocate for children and adults living with Autism Spectrum Disorder (autism and Asperger's and other conditions represented on the autism spectrum) and their families. As such, it is committed to representing individuals with diverse and changing educational needs. Iowa Autism Council (IAC) shall have, and will perform, functions and duties as specified by law. Responsibilities include offering advice, consultation, and recommendations to Governor Culver and the Iowa legislature regarding matters concerning the ASD population. The role of the Council members is to advise, not advocate, for an individual position. Advise means to inform, counsel, recommend, suggest or guide. To advocate means to plead for your case or position, to favor an individual case or argument. The advisory Council is to provide advice, based on facts and good judgment.

Maternal age-specific risk of non-chromosomal anomalies.

OBJECTIVES: To determine the excess risk of non-chromosomal congenital anomaly (NCA) among teenage mothers and older mothers. DESIGN AND SETTING: Population-based prevalence study using data from EUROCAT congenital anomaly registers in 23 regions of Europe in 15 countries, covering a total of 1.75 million births from 2000 to 2004. PARTICIPANTS: A total of 38,958 cases of NCA that were live births, fetal deaths with gestational age > or = 20 weeks or terminations of pregnancy following prenatal diagnosis of a congenital anomaly. MAIN OUTCOME MEASURES: Prevalence of NCA according to maternal age, and relative risk (RR) of NCA and 84 standard NCA subgroups compared with mothers aged 25-29. RESULTS: The crude prevalence of all NCA was 26.5 per 1000 births in teenage mothers (<20 years), 23.8 for mothers 20-24 years, 22.5 for mothers 25-29 years, 21.5 for mothers 30-34 years, 21.4 for mothers 35-39 years and 22.6 for mothers 40-44 years. The RR adjusted for country for teenage mothers was 1.11 (95% CI 1.06-1.17); 0.99 (95% CI 0.96-1.02) for mothers 35-39; and 1.01 (95% CI 0.95-1.07) for mothers 40-44. The pattern of maternal age-related risk varied significantly between countries: France, Ireland and Portugal had higher RR for teenage mothers, Germany and Poland had higher RR for older mothers. The maternal age-specific RR varied for different NCAs. Teenage mothers were at a significantly greater risk (P < 0.01) of gastroschisis, maternal infection syndromes, tricuspid atresia, anencephalus, nervous system and digestive system anomalies while older mothers were at a significantly greater risk (P < 0.01) of fetal alcohol syndrome, encephalocele, oesophageal atresia and thanatophoric dwarfism. CONCLUSIONS: Clinical and public health interventions are needed to reduce environmental risk factors for NCA, giving special attention to young mothers among whom some risk factors are more prevalent. Reassurance can be given to older mothers that their age in itself does not confer extra risk for NCA.

Mirada actual des de la psicoanàlisi sobre l'espectre autista : La pràctica entre varis com a alternativa terapéutica en el TEA

Aquest treball es proposa investigar sobre la intervenció psicoanalítica i clínica en el trastorn de l'espectre autista. Es tracta de fer un recorregut crític sobre l'augment de la incidència del trastorn, la discussió sobre la etiologia de la mateixa i les alternatives d'intervenció des de la pràctica entre varis que proposa el psicoanàlisi lacanià.

Normal variation in fronto-occipital circuitry and cerebellar structure with an autism-associated polymorphism of CNTNAP2.

Recent genetic studies have implicated a number of candidate genes in the pathogenesis of Autism Spectrum Disorder (ASD). Polymorphisms of CNTNAP2 (contactin-associated like protein-2), a member of the neurexin family, have already been implicated as a susceptibility gene for autism by at least 3 separate studies. We investigated variation in white and grey matter morphology using structural MRI and diffusion tensor imaging. We compared volumetric differences in white and grey matter and fractional anisotropy values in control subjects characterised by genotype at rs7794745, a single nucleotide polymorphism in CNTNAP2. Homozygotes for the risk allele showed significant reductions in grey and white matter volume and fractional anisotropy in several regions that have already been implicated in ASD, including the cerebellum, fusiform gyrus, occipital and frontal cortices. Male homozygotes for the risk alleles showed greater reductions in grey matter in the right frontal pole and in FA in the right rostral fronto-occipital fasciculus compared to their female counterparts who showed greater reductions in FA of the anterior thalamic radiation. Thus a risk allele for autism results in significant cerebral morphological variation, despite the absence of overt symptoms or behavioural abnormalities. The results are consistent with accumulating evidence of CNTNAP2's function in neuronal development. The finding suggests the possibility that the heterogeneous manifestations of ASD can be aetiologically characterised into distinct subtypes through genetic-morphological analysis.

El paper del joc en el desenvolupament d'infants amb TEA

Jugar no és només un sinònim de diversió, sinó que darrera d’aquesta acció s’amaguen molts elements que són imprescindible per al desenvolupament infantil, ja que l’afavoreix en tots els àmbits de la seva vida. Un nen amb Necessitats Educatives Especial té el mateix dret de gaudir d’una estona de joc, i desenvolupar-­‐se com a persona. De fet, el joc és considerat una eina d’aprenentatge a l’edat infantil. Per això, el present treball de grau té com objectiu principal analitzar la importància del joc com a eina educativa amb infants amb un Trastorn de l’Espectre Autista. S’utilitza una metodologia qualitativa, i a través de l’observació, s’analitza com el joc ajuda a un infant amb Trastorn de l’Espectre Autista a adquirir determinades habilitats i capacitats que li permeten tenir certa autonomia. Els resultats obtinguts, permeten afirmar que la Unitat de Suport a l’Educació Especial utilitza el joc com un recurs didàctic per a treballar amb infants amb Autisme. Per això, es planteja una proposta d’intervenció dins d’aquesta unitat.

Prognostic significance of nailfold capillary microscopy in patients with Raynaud's phenomenon and scleroderma-pattern abnormalities. A six-year follow-up study.

The aim of this study was to assess the prognostic significance of scleroderma capillary pattern (SD-pattern) in patients with Raynaud's phenomenon. Thirty patients with a capillaroscopy examination suggestive of scleroderma (megacapillaries and/or avascularity) but without clinical criteria of scleroderma (ARA criteria) were reevaluated 6 years after the initial clinical and capillaroscopy examinations. SD-pattern abnormalities were classified according to a semiquantitative method. Eight out of the 28 evaluated patients (28%) developed a scleroderma spectrum disorder (SDS). The presence of avascularity and/or a mean of more than two megacapillaries digit greatly enhanced the percentage of evolution toward SDS (70%/88% respectively). Most of the patients with few enlarged capillaries and no capillary rarefaction at entry had primary acrocyanosis (11/15). None of them developed SDS. The microangiopathy disappeared during the follow-up period in most of these patients (14/15). These results confirm the prognostic value of SD-pattern capillary abnormalities for SDS. Primary acrocyanosis, a benign clinical entity should be considered in presence of few megacapillaries and without capillary rarefaction.

Defining the Effect of the 16p11.2 Duplication on Cognition, Behavior, and Medical Comorbidities.

IMPORTANCE: The 16p11.2 BP4-BP5 duplication is the copy number variant most frequently associated with autism spectrum disorder (ASD), schizophrenia, and comorbidities such as decreased body mass index (BMI). OBJECTIVES: To characterize the effects of the 16p11.2 duplication on cognitive, behavioral, medical, and anthropometric traits and to understand the specificity of these effects by systematically comparing results in duplication carriers and reciprocal deletion carriers, who are also at risk for ASD. DESIGN, SETTING, AND PARTICIPANTS: This international cohort study of 1006 study participants compared 270 duplication carriers with their 102 intrafamilial control individuals, 390 reciprocal deletion carriers, and 244 deletion controls from European and North American cohorts. Data were collected from August 1, 2010, to May 31, 2015 and analyzed from January 1 to August 14, 2015. Linear mixed models were used to estimate the effect of the duplication and deletion on clinical traits by comparison with noncarrier relatives. MAIN OUTCOMES AND MEASURES: Findings on the Full-Scale IQ (FSIQ), Nonverbal IQ, and Verbal IQ; the presence of ASD or other DSM-IV diagnoses; BMI; head circumference; and medical data. RESULTS: Among the 1006 study participants, the duplication was associated with a mean FSIQ score that was lower by 26.3 points between proband carriers and noncarrier relatives and a lower mean FSIQ score (16.2-11.4 points) in nonproband carriers. The mean overall effect of the deletion was similar (-22.1 points; P < .001). However, broad variation in FSIQ was found, with a 19.4- and 2.0-fold increase in the proportion of FSIQ scores that were very low (≤40) and higher than the mean (>100) compared with the deletion group (P < .001). Parental FSIQ predicted part of this variation (approximately 36.0% in hereditary probands). Although the frequency of ASD was similar in deletion and duplication proband carriers (16.0% and 20.0%, respectively), the FSIQ was significantly lower (by 26.3 points) in the duplication probands with ASD. There also were lower head circumference and BMI measurements among duplication carriers, which is consistent with the findings of previous studies. CONCLUSIONS AND RELEVANCE: The mean effect of the duplication on cognition is similar to that of the reciprocal deletion, but the variance in the duplication is significantly higher, with severe and mild subgroups not observed with the deletion. These results suggest that additional genetic and familial factors contribute to this variability. Additional studies will be necessary to characterize the predictors of cognitive deficits.

La relaxació a l'educació infantil com a eina per fomentar un bon clima d'aula a l'escola inclusiva

La relaxació és una eina inclusiva dins l’escola que ajuda a treballar la competència emocional. La investigació parteix de l’ús de diferents tècniques de relaxació per poder ajudar, a l’alumnat d’educació infantil, a adquirir un grapat de coneixements per regular les seves emocions i l’estrès. L’estudi té com a objectiu la pràctica de diferents tècniques i jocs en una aula de P4 amb alumnes que presenten Trastorn de l’Espectre Autista. Les dades recollides i analitzades fan possible afirmar que la relaxació dóna beneficis tant a nivell personal com social i permet el treball de les emocions.

Children at psychiatric risk and their families in Bucharest, in the context of 25 years of changes after December 89’ Romanian Revolution

The aim of the present dissertation was to capture a picture of child and adolescent mental health in Romania, in the context of almost 25 years of changes following the Romanian Revolution of December ’89. A three-part study was carried out in order to provide consistent answers to the pre-defined objectives: to appraise the development of child and adolescent mental health services in Romania (Part I), to explore the characteristics of clinically-referred patients in a Romanian child and adolescent psychiatry department (Part II), to examine the children’s mental health state and its connections with family functioning and associated risk factors (Part III). A multi-method research approach was used, comprising one qualitative analysis and two quantitative research studies. Part I consisted of a comparative qualitative analysis of the answers given by 10 mental health professionals at a 12-questions open ended interview about the current situation in child and adolescent mental health in Romania, on three topics: changes, challenges, solutions. Part II involved a descriptive quantitative analysis of certain variables (e.g. age, gender, primary diagnosis, co-morbidities, time of hospitalization) conducted on the patients who had been admitted to the Child and Adolescent Psychiatry Department at “Prof. Dr. Alexandru Obregia” Psychiatry Hospital, Bucharest in 1991 and in 2013. Part III was conducted on 342 subjects enrolled in two clinical groups and one school group, this study being performed through a cross-sectional analysis on multi-informant child and adolescent mental health problems and competencies (CBCL, YSR, SDQ P, SDQ SR) and their interrelation with household information (HQ) and family functioning (FAD). Outlining the results it can be stated that: 1) The CAMH System in Romania is definitely set on the path of reorganization, including a higher involvement of beneficiaries and of the community. 2) The characteristics of the admitted patients have changed significantly during the last almost 25 years since `89 December Revolution, under the influence of word wide trends in child psychiatry and of administrative aspects of the mental health network in Romania. 3) The rates of main diagnoses and co-morbidities confirm the reports in literature, with Autism Spectrum Disorder being the most frequent childhood psychiatric disorders in this study. 4) The children’s mental health problems in the psychiatry group are comparable to those reported for other clinical populations. 5) Significant score differences were observed according to various household features and also meaningful associations between a child’s clinical status and different aspects of family functioning. The Romanian Child and Adolescent Psychiatry has started to adopt the norms and standards of the European Union. In the 25 years that have elapsed after the 1989 Revolution, many changes have occurred in Romanian CAMH, but many unresolved issues have also risen. Therefore, the major contribution of this thesis is that it provides a coherent and updated overview of the present-day situation from three different perspectives- those of mental healthcare professionals, the one observed in clinical patients and the one reported by children’s families.

The reliability of the Brazilian version of the Composite International Diagnostic Interview (CIDI 2.1)

The objective of the present study was to determine the reliability of the Brazilian version of the Composite International Diagnostic Interview 2.1 (CIDI 2.1) in clinical psychiatry. The CIDI 2.1 was translated into Portuguese using WHO guidelines and reliability was studied using the inter-rater reliability method. The study sample consisted of 186 subjects from psychiatric hospitals and clinics, primary care centers and community services. The interviewers consisted of a group of 13 lay and three non-lay interviewers submitted to the CIDI training. The average interview time was 2 h and 30 min. General reliability ranged from kappa 0.50 to 1. For lifetime diagnoses the reliability ranged from kappa 0.77 (Bipolar Affective Disorder) to 1 (Substance-Related Disorder, Alcohol-Related Disorder, Eating Disorders). Previous year reliability ranged from kappa 0.66 (Obsessive-Compulsive Disorder) to 1 (Dissociative Disorders, Maniac Disorders, Eating Disorders). The poorest reliability rate was found for Mild Depressive Episode (kappa = 0.50) during the previous year. Training proved to be a fundamental factor for maintaining good reliability. Technical knowledge of the questionnaire compensated for the lack of psychiatric knowledge of the lay personnel. Inter-rater reliability was good to excellent for persons in psychiatric practice.

Clinician-Perceived Bridges and Barriers to Parental Implementation of Picture Exchange Communication System (PECS): An evaluation.

Picture Exchange Communication System (PECS) is an augmentative and alternative communicative system that improves communication and decreases problem behaviors in children with Developmental Disabilities and Autism. The mediator model is a validated approach that clinicians use to train parents to perform evidence-based interventions. Parental non-adherence to treatment recommendations is a documented problem. This qualitative study investigated clinician-perceived factors that influence parental adherence to PECS recommendations. Three focus groups (n=8) were conducted with Speech Language Pathologists and Behavior Therapists experienced in providing parents with PECS recommendations. Constant comparison analysis was used. In general, clinicians believed that PECS was complex to implement. Thirty-one bridges were identified to overcome complexity. Twenty-two barriers and 6 other factors also impacted parental adherence. Strategies to address these factors were proposed based on a review of the literature. Future research will be performed to validate these findings using parents and a larger sample size.

I Believe in me, not OCB: Evaluation of Group Function-Based CBT as a Treatment for Obsessive Compulsive Behaviour in Four Children with HFA

Researchers have conceptualized repetitive behaviours in individuals with Autism Spectrum Disorder (ASD) on a continuum oflower-Ievel, motoric, repetitive behaviours and higher-order, repetitive behaviours that include symptoms ofOCD (Hollander, Wang, Braun, & Marsh, 2009). Although obsessional, ritualistic, and stereotyped behaviours are a core feature of ASD, individuals with ASD frequently experience obsessions and compulsions that meet DSM-IV-TR (American Psychiatric Association, 2000) criteria for Obsessive-Compulsive Disorder (OCD). Given the acknowledged difficulty in differentiating between OCD and Autism-related obsessive-compulsive phenomena, the present study uses the term Obsessive Compulsive Behaviour (OCB) to represent both phenomena. This study used a multiple baseline design across behaviours and ABC designs (Cooper, Heron, & Heward, 2007) to investigate if a 9-week Group Function-Based Cognitive Behavioural Therapy (CBT) decreased OCB in four children (ages 7 - 11 years) with High Functioning Autism (HFA). Key treatment components included traditional CBT components (awareness training, cognitive-behavioural skills training, exposure and response prevention) as well as function-based assessment and intervention. Time series data indicated significant decreases in OCBs. Standardized assessments showed decreases in symptom severity, and increases in quality of life for the participants and their families. Issues regarding symptom presentation, assessment, and treatment of a dually diagnosed child are discussed.

Being Relational With Underserved Youth: A Reflective Process

When working with under-served youth, possibly the most important, yet often times the most difficult, thing for practitioners to do is to build positive, trusting, open relationships. This study aims to address this challenge. Two groups of under-served youth were examined, one being teens deemed “at-risk” and one being youth with Autism Spectrum Disorder (ASD). This study was novel in its approach as all efforts were made to ensure the youth's opinions on how to be relational with them were heard. Two youths with ASD were nonverbal and a special picture interview procedure was developed to allow their participation. Three thematic statements emerged from the data collected: 1. Youth need low anxiety relationships. 2. Youth need novel forms of engagement. 3. Youth need us to understand that their actions reflect their histories. The analyses that lead to these statements are described as well as the reasoning and implications of these statements.

Benefits of Using Target Activities to Assist in Improvement of Striking in Striking and Fielding Games for Individuals with Autism: A Comparative Case Study

The purpose of the research study was to increase understanding about the potential benefits of combining target activities with striking-fielding games for individuals with high functioning autism spectrum disorder. A comparative case study was conducted to understand if target activities can assist in improving the skills of striking and throwing, aid the learning of tactics and add to current understanding of how certain teaching skills might be linked to the transfer between target and striking-fielding games. Data was collected through observations, student journals and interviews and were analyzed using both inductive and deductive methods. Results show an appearance of improvement in throwing, striking, bowling and badminton for overall skill levels. In regards to teaching skills, appropriate and effective teaching techniques, appropriate and effective equipment, dynamic of participants and student-instructors and consistency of attendance are vital. Future research should further look at the transferability to outdoor settings and interview the participants.